Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
So, what did you get from your mother this past Christmas?
Dear Readers . . . Lilly is referring to a story I shared with you some time ago in this column.
Lilly . . . you will find the answer to your question at the end of my reply. Thank you for remembering and for asking.
Before my mother developed Alzheimer’s, we had a ritual. Every Christmas, I walked into the house with a gift to myself . . . a new outfit, a pair of shoes or some jewelry. This was our conversation as I cajoled my mother into paying for it.
Me: Do you want to give me this for Christmas?
Mother: Sure. How much?
No matter what price I stated, she always said, “Only that much?! You have a good job and you can’t even pay for your own present?“ (I was a teacher; she packed flowers at a farm).
Whenever I took cash from her, she would always say, “You not shame to take money from your poor mother?”
Me: No, no shame. Thank you!
Okasan has been gone for 17 years now, and every Christmas, I have a Christmas present from her.
Last year, she was especially generous and got me my first Dooney & Bourke handbag! I am still waiting to be reimbursed from above.
On this same note, I know of family members who find it difficult to face the death anniversaries of their loved ones. Some people can’t even get out of bed on these days.
I know it’s hard, but, sometimes, humor attached to a pleasant memory helps.
This past week marked the 17th anniversary of my mother’s passing. I drove to a supermarket to look for a potted plant of anthuriums since she raised and sold them before she was diagnosed with Alzheimer’s. A very tiny plant was selling for almost $25. That’s crazy to pay that much, I thought to myself, and drove to Trader Joe’s in the heavy rain.
On the way, I had this conversation with my mother.
Mother: Hideko! You can’t spend $25 for your poor mother? You so cheap. You not shame?”
Me: Sorry, Okasan, that is too much. And, no, no shame.
I laughed all the way to Trader Joe’s where I found a flowering orchid plant for less than $7. I made a display of her photo, the orchids, a candle and a boar figurine since she was born in the Year of the Boar. Each time I glanced at the display, I chuckled and smiled.
I feel very isolated because our children and grandchildren, except for one daughter, never visit us. I know my wife no longer speaks and doesn’t recognize anyone, but I’m here. We spent most of our years raising our children and our house was always open to our grandkids. In fact, they spent most of their summers with us. It’s a very hurtful thing to live like this. Do you have other families in similar isolation? I can’t help but feel angry.
You are not alone. I hear this often in families. At first, we made excuses for them such as:
Perhaps they don’t want to see their loved ones in their present state of illness. Or . . .
Perhaps they want to remember their loved ones as they were before Alzheimer’s. Or . . .
Perhaps they can’t handle people who are not well. Or . . .
Perhaps they are just not aware of what they are doing.
Today I’m saying this: Let’s treat them like adults. Ask them. Ask them why they are avoiding both you and your wife. Tell them how isolated and lonely you feel and that even if your wife is in this stage of Alzheimer’s, she knows. She knows, hears and feels the presence of loved ones.
And you are still there. Tell them you would appreciate some home-cooked meals and to have other chores done. It seems such a simple way to live our humanities, but, unfortunately, for some, we need to nudge them and be upfront with them. Let us know if this works.
In my present support group, the problems facing caregivers are not the daily caring of their loved ones, but of sibling problems — siblings being more interested in financial gains, their share of the estate even before the loved ones are gone and avoiding the care of their loved ones. Let us return to our humanities.
How assertive are you with your physicians? Do you accept everything they prescribe?
A few months ago, I saw the doctor for a symptom. She couldn’t find the cause, called it stress and suggested that I see a cognitive therapist. Knowing my symptoms and lifestyle, I didn’t buy into a “stress” diagnosis, so I went online and researched their program. I didn’t think I needed a therapy group of music and talk.
The following week, I saw another physician to get a second diagnosis. She prescribed Advair without finding the cause. I emailed my primary doctor and asked for X-rays. She sent me for the X-ray and also told me to stop the Advair. The X-ray found something in my lung. She told me to come back in six months to see if the abnormality is still there.
“No,” I said. “If in six months, the abnormality is still here, what are you going to do? I would like to have it done now.” So, she scheduled me for a stress test, a CT scan, an ultrasound after finding a nodule in my thyroid and a pulmonary test. Heart and lungs were all good, according to the cardiologist and pulmonologist.
That “thing” that showed up on my lung was a scar tissue from the pneumonia I got last year. I’ll have to go back in a year to make sure it remains a benign nodule. I went outside of “the network” to make this appointment with the pulmonary specialist.
Regarding those tests, if I didn’t ask the physician to add the word “URGENT” to her referrals, they would have scheduled them months from now. I suggest that you advise your physician to add “URGENT” to all tests. It makes a difference. I’ve heard of patients whose tests are scheduled three or four months later. We can change that with “URGENT.”
As my 80-plus-year-old neighbor in Pähoa used to say to nurses and doctors, “Me Body, Me Boss.” It’s good to be bossy, folks. That’s why Hawai‘i Herald editor Karleen Chinen and I get along so well — we call each other “Boss Lady.”
Once on O‘ahu, I told the surgeon, “I don’t want to die yet, so be sure I come out of that operating room alive.” He asked the anesthesiologist to wait until he was in the operating room before administering the anesthesia, and he actually held my hand. When I regained consciousness after the surgery, he was sitting at my bedside, holding my hand. He said the surgery had gone well.
I had given him a personal responsibility and he had come through for me. Sometimes, we need to do this to ensure that we will not be just a medical number in their computer.
And finally . . . when was the last time you took a walk and stared down at the sidewalk, or got up-close and personal with a tree trunk? When did you last peer up at the clouds or at the top of a tree? David Schiller’s “See Your Way to Mindfulness” will give you a reason to hit the pause button in your busy life so you can notice that blade of grass between the cracks in the sidewalk, or watch the dewdrops rolling around on a taro leaf. It will slow down your steps and give you a magical moment, which, hopefully, will be a moment of pure joy. Here are two quotes from the book:
“In all things of nature there is something of the marvelous.” — Aristotle
“You need to let the little things that would ordinarily bore you suddenly thrill you.” — Andy Warhol.
Frances Kakugawa was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease. A native of Kapoho on Hawai‘i island, she now lives in Sacramento. Frances has melded her professional training as a writer and educator and her personal caregiving experiences to write several books on caring for people with memory-related illnesses. She is a sought-after speaker, both in Hawai‘i and on the Mainland, sharing strategies for caregiving, as well as coping with the stresses of caregiving.